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Von Hippel Lindau Disease Symptoms

Sometimes von Hippel Lindau disease has no symptoms. When it does have signs, they vary from person to person and depend on the problems caused by the disease. These symptoms usually do not mean you have VHL. However, it is important to discuss any symptoms with your doctor, since they may signal other health problems.

Pheochromocytoma Symptoms

Pheochromocytomas may cause symptoms that are like what you feel in an emergency (“fight or flight”) situation. These include:

  • High blood pressure, either all the time or just sometimes
  • Sweating
  • Headache
  • Rapid or irregular heartbeats
  • Feelings of anxiety, panic and fear
  • Pale skin
  • Dizziness or lightheadedness when you stand
  • Tremor
  • Weight loss

Hemangioblastoma Symptoms

Symptoms of hemangioblastomas vary depending on their location.


  • Difficulty walking and with muscle coordination
  • Dizziness
  • Headaches
  • Double vision
  • Vomiting

Spinal Cord

  • Decreased feeling in the arms, legs and body
  • Weakness
  • Difficulty walking
  • Difficulties with bowel and bladder function

Brain Stem 

  • Decreased feeling in the arms, legs and body
  • Walking difficulties
  • Swallowing difficulties
  • Headaches
  • Poor coordination

If you or someone in your family has been diagnosed with VHL, we can help.Call 1-877-632-6789 to make an appointment or request an appointment online.

Why Choose MD Anderson?

  • High level of experience with von Hippel Lindau disease
  • Specialized physicians, including highly skilled surgeons, with expertise in VHL
  • Integrated approach and personalized treatment for von Hippel Lindau disease
  • Advanced genetic testing and counseling
  • Clinical trials of new therapies for VHL

Von Hippel Lindau Disease Knowledge Center

Treatment at MD Anderson

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